Jake Peters rehabilitation Fund
The recovery from this type of an acute attack is a long, slow process. He underwent massive steroid treatment the first five days in an attempt to reduce swelling in his spine, which did not produce much results. He then underwent 6 days of plasma exchange therapy which produced limited results. He recently received a rituxin treatment and a cytoxin (chemotherapy) treatment in an attempt to kill the antibodies that are attacking his spine. Please pray that these treatments will have a positive effect and we can begin the long road to recovery.
Please check the journal for daily updates. Thank you for your continuous thoughts and prayers.
By Rex Peters - Last week
Happy Birthday Jake! Jake turned 18 today! A major milestone for any teen as they transition into adulthood. It also means he may begin to qualify for some government disability benefits. But of course we will have to wait 3+ months to find out due to the exhausting application process. Anyhow, we celebrated both Jake's 18th ( Aug. 19) and Dad's 50th (Aug. 16) with a fun filled "Vintage Dudes" birthday bash last Sat. We were joined by family and close friends, along with many of Jake's Loyola buddies and parents, and a few of Jake's favorite nurses and caregivers he has got to know the past 8 months. It was a night full of good times. See party photos!
Jake has settled in nicely since his homecoming almost 3 weeks ago. He looks great and feels good most days. But still has cruddy days where he struggles to find energy and motivation - but don't we all! We are still battling through some health and neurological issues. He has another UTI! This has been an ongoing problem for months that antibiotics can't seem to eradicate. He may have to get another PIC line inserted for long term IV antibiotics. This would be a big setback. Let's pray we can find a solution! We are also trying to heal another stage 2 pressure sore on his buttocks. We believe this one was caused by being in his chair a lot since his return home, and not tilting often enough to relieve the pressure on his butt. These scare me the most! He has always had sensitive skin, and being a diabetic on top of that - his ability to heal is slowed and a pressure sore could turn into a major problem with infection. He has also developed some swelling in his hands and feet that could be an indication of a kidney issue - we will find out more on Fridays Urology visit. He is also beginning to experience short episodes of blindness and hearing loss associated with headaches. This sounds like hypo static ortho tension. We will keep our fingers crossed that his neurologist can solve that puzzle. So even though he looks great, there are continued underlying health issues that can be very problematic.
Nonetheless, Jake goes to take his Sr. picture tomorrow as he/we attempt to get him through a final year at Loyola so he can graduate with his 2016 classmates. Not an easy endeavor! It will take a lot of coordination from many people to make this happen. But it appears that everyone is on board and ready to take on the challenge. We hope he can maintain the mental and physical stamina to attend at least 3 days a week. He will be taking English, Math, Biology, and History. And despite missing a full semester last spring, he will meet the minimum graduation requirements to get his diploma next June. His assistive technology and he, and his teachers ability adapt are going to be put to the test next week when classes begin. But it should be a big morale boost for him to be able to interact with his cub buddies on a regular basis.
Thank you to all who sent birthday cards/gifts and made donations on his behalf for his birthday! Although most of his material needs (home renovation, transport van and equipment) have been met. We still need help with day to day supplies and his service needs. Just his incontinence supplies that are not covered by insurance (catheters, diapers, bed chucks, wipes, etc) are costing us almost $20 a day. And we are just beginning to explore the cost of service needs such as counseling, massage therapy, additional specialized physical therapy, and school tutoring. We are beginning to realize that ongoing financial support will become a necessity. We feel extremely blessed with the amount of support we have received from all corners of the world and all walks of life. Thank you! Please continue to support with donations through www.gofundme.com/jakepeters or send checks payable to Rex Peters at our home address: 28941 Canyon Oak Place. Santa Clarita, Ca. 91390
Please continue to pray that Dr.'s can resolve his bladder/UTI issues. That his pressure sores will heal rapidly. And that his medical team can also solve the mystery swelling and hypo static ortho tension issues. Pray that Jake will make a smooth transition back to Loyola and that he will find the energy and motivation to pursue his degree with success. And most of all, thank God for all the loving support our family has experienced from so many people, and in so many ways, who genuinely care about Jake's quality of life and our family's challenges after such a devastating event.
God bless you all!
He is scheduled to go home July 8. However, since he has progressed so well these past 2 weeks, we are requesting an additional 2 weeks of acute rehab. Hopefully Kaiser will approve it! We could use the extra time to get our new home ready for him, get additional family caregiver training, and secure in home nursing care. It's been a whirlwind month to say the least! Dealing with Jake and his needs, moving, and preparing a new home has been exhausting and stressful. Nonetheless, we look forward to getting him home and settled into a daily routine before school starts in August.
Thank you for your continued thoughts and prayers!
From medical standpoint: he is still breathing on a ventilator. Blood sugars have stabilized since getting off steroids and he rarely has a reading above 200. He is still battling chronic UTI's and has been placed on a 6 week antibiotics regiment. He has 2 small kidney stones, but they are not inhibiting his kidney function. Body movements are still limited to his neck, shoulders and left arm. He does have flickers of movement in his right hand. And he does have strong spasticity in his legs from time to time, which is uncontrolled, involuntary movements.
Emotionally, he struggles with fact that this may be permanent and he may never play baseball again or get back to Loyola and graduate. He misses his dogs, his friends, and sleeping in his own bed.
His urology evaluation has produced somewhat more encouraging results. His urologist took him off the Foley catheter and decided to go to in and out catheters to see if his bladder could drain on its own when full, and to also see if the full bladder would trigger the scary autonomic dysreflexia episodes he was having back March. Good news - his auto dysflexia did not return as before - no massive headache, no hot flashes, and only a mild elevation in blood pressure. Not so good news - the bladder was not able to completely void on its own. But it was able to void approximately 200 CC - something is better than nothing! So urology wants to do a bladder and bowel dynamics test to see exactly how the bladder is functioning to determine the next course of action. Which could be back to another Foley (which produce constant UTI's in Jake :-() or a super pubic catheter -which is a tube directly to the bladder through the stomach which is less likely to induce infection. We should have more information about the long term plan in the next week or so.
I would love to hear how Jake is doing. My Mom and I pray for him everyday.
He looks wonderful. I wish you healing and continued strength!
Continued prayers for you, Jake and your family.
wish i could give more. ill keep you in my prayers jake get well soon #C4L
Kyle & I continue to pray for you Jake. Praying you get out of the hospital to enjoy the great outdoors soon. Stay strong!